Open Sourcing A Disease Diagnosis

from the with-enough-eyes,-all-biological-bugs-are-shallow dept

If you follow Larry Lessig on Twitter, you noticed that all day Monday he was putting messages on Twitter about how "JZ" was sick and was trying to "open source" his diagnosis. This pointed to a blog that only referred to "JZ" as "Z" and had some basic info on the symptoms of "the patient." There were a series of blog posts, detailing some of the details of the sickness, tests that had been done, and some of the general questions that the doctors were trying to zone in on. It even included a list of possible diagnoses, crossing out the ones that had been ruled out. Relatively quickly, two separate readers came up with an obscure medical journal article from South Korea from 1994 "about heptatic mega-hemagionas and FUOs," which apparently quite accurately described the situation.

It didn't take long for people to realize that the JZ was Harvard professor Jonathan Zittrain, and once revealed, he put up a blog post of his own clarifying the situation, noting that they no longer needed help with the diagnosis, and everything sounds fine (what they diagnosed sounds treatable). He especially wanted to downplay the situation, and not create too much concern for his well-being or the need for any immediate help. The original blog where the details were being shared was taken down, and it now just points to Zittrain's own explanation.

It's great to hear that this worked out, and so rather than worrying about Jonathan, I thought it was interesting to think about this aspect of "open sourcing" a diagnosis. Obviously, when it comes to medical info, there are always serious privacy concerns, but this definitely does seem like a case where when there's confusion, more eyes and more brains can help. I'm reminded of the silly complaint often lodged against Wikipedia, that people wouldn't want brain surgery done by "a crowd," but by an expert. But, as has been noted over and over again, that presumes the crowd includes no experts, and that the real experts won't quickly establish themselves as such. On top of that, it ignores that once you have many different people -- some experts, some not -- you may get obscure or different perspectives that help lead to the important nugget of info you were seeking out, such as a medical journal article from Korea in 1994.

All this has me wondering if there's an opportunity out there for the medical profession to make more use of something like this, with patient consent, obviously. I know doctors converse informally all the time, but opening up some aspects of the diagnosis could be interesting. Of course, I also don't know how often situations like this occur, where the diagnosis is obscure enought that additional help might be useful, but it seems like an area that has possibilities.

Back to the Future

This is how medicine worked in ancient Persia (for example): if you were sick you'd ask around (or perhaps sit in the street on a bed and ask passers by), "have you seen this symptom? What or who helped?"

Are things any better today? All the net has done is change the scale, not the nature.

Disagree only as a matter of subtlety...

"I'm reminded of the silly complaint often lodged against Wikipedia, that people wouldn't want brain surgery done by "a crowd," but by an expert. But, as has been noted over and over again, that presumes the crowd includes no experts, and that the real experts won't quickly establish themselves as such."

The heart of that "silly" complaint is the difference between having more eyes on a problem in an organized, controlled way and "crowdsourcing" which, rightly or wrongly, conjures up its internet application of just tossing the problem into the wild and having EVERYONE that wants to get involved.

I too wouldn't want a wikipedia scenario in terms of performing brain surgery, nor wouls I want a brain surgery expert. I want a small team of experts.

In the end, I probably agree more than I disagree, but with medicine I think you have to take a degree of subtle difference into account. I don't think we want crowdsourced diagnosis, we want teamsourced diagnosis, otherwise known as collaboration....

Crowd vs expert

I was recently diagnosed with something serious (thankfully not life threatening) and one thing the Surgeon was keen to reassure me with was that his diagnosis had been arrived at by a group of 20-30 doctors - not by him alone.

The only problem with larger scale crowdsourcing is making sure that the filter mechanisms work well enough to eliminate the opinions of the idiots.

This reminds me of a study that determined that when computers statistically analyze symptoms and patient data, they consistently do significantly better than doctors do in determining a diagnosis and treatment -- even when doctors are given access to the exact data and computer recommendations.

Understandably, a lot of people feel wary of taking treatments out of the hands of a single expert, but all data seems to suggest we should be considering these sorts of diagnosing methods.

Re:

It's weird, I kinda deduced that computers, assisted by doctors of course, could do better than humans at this stuff if programmed correctly but for some reason a lot of text that I've read in the past (with no studies backing them up of course, typical of mainstream media information) suggested otherwise. Of course doctors should be used to interpret what the computer says and to input the data and know what data needs to be inputted, etc... and ensure nothing absurd comes out. The doctors would still have to play an important role but I think that computers could help when it comes to coming up with the most statistically likely possibility that a doctor might miss.

Diagnostics will be short lived.

I strongly suspect diagnostics, in its current form, to be short lived (maybe another 20-30 years). It will be replaced by small personal medical monitors, maybe as part of a cell phone, that tracks and trends your personal health. People will trade aggregate health information in order to get accurate and timely diagnosis.

For example, your phone could tell you that you had the flu (or cancer for that matter) before you felt any symptoms. Not only that, but it could show you on a map the percentages of the population carrying the flu. This of course assumes these advances wouldn't wipe out the flu.

I'm not sure how we'd gather all the personal medical info, could be nanobots in the blood stream or with the way things are going a simple finger scan could tell you about skin cancer on your calf. Either way people are going to move out of diagnosing, because the time it takes a doctor to work through a history, track blood work, and understand a patient is truly inefficient and reactive. I expect doctors would be brought in as expert filters in some cases, but mostly be allowed to just treat patients rather than try to figure them out.

I followed the developments with a lot of curiosity. It's great that it worked, and, it is a treatable condition.

The crowdsourcing on this problem, wasn't, for me, the major issue. The issue that interested me the most was the boundary pushing. The openness of the doctor's team, and their dedication to save a life. In the end, they were reaching the same diagnosis on their own.

The fact that it was a health puzzle, doesn't actually change the game much. As long as you keep focused that in the other end, it's a human being needing help.

In a case like this, it is needed a experts team to weed out the proposals, but, humble enough to accept different suggestions and solutions. These are not easy to find.

So, as in almost every other way that crowdsourcing has been tried, it's the team in charge of the implementation and execution, that actually needs to be special, not the crowd.

Re:

What I see people missing about the crowd part is that the crowd is dynamic and as different voices are heard the direction can change. Some members of the crowd build on the work of others and some pursue improbable lines but in the end much more is considered than a single person or even a team of experts can possibly look at. If I correctly recall my stats classes, the larger the sample size the smaller the margin of error. Less error from doctors is something I'm in favor of.

Re:

Has anyone every heard the phrase 'too many cooks in the kitchen'?!?

Everyone seems to be under the assumption that each doctor in the crowd will somewhat agree - what happens when there are fundamental differences of opinion (i.e. tradition doctors vs. holistic physicians).

Re: Re:

That's why you need to have some sort of standards-based method of recognizing an "expert."

You would not, for example, want to listen to a "healer" who claims "alternative medicine" is legitimate. Even if lots and lots of people believe it's true, and the "healer" claims to have as much legitimacy as a medical doctor.

Of course, if you're going to listen to that kind of "healer," then you're probably not interested in a legitimate diagnosis in the first place.

PatientsLikeMe.com

There is a great TED presentation by one of the founders of Patients Like Me where patients share their medical histories and derive from the aggregate data where they are in their treatment, and what potential treatments may offer w.r.t. long term viability.

Similar to my situation

I had a lump below my ear. My doc sent me for a biopsy, results were "consistent with Wharthin's Tumor", a benign condition of the parotid gland. Over time it began to hurt and grow rapidly. After haunting forums and doing research I found that Wharthin's Tumor does NOT grow rapidly and rarely hurts. I went for a 2nd opinion, the 2nd surgeon agreed that it needed to be removed and it turned out to be an early stage mucoepidermoid carcinoma. The internet played a huge role in preventing me from having to undergo radiation therapy and/or losing my life.

Re: Similar to my situation

You can bet that if health freedom advocates don't stop the FDA and the government, they will end up regulating the FDA in favor of big corporations and groups of doctors who lobby for the competition of independent doctors to be removed to the detriment of the public.

Re: Re: Similar to my situation

Great idea!

A website for "open-source" collaboration of diagnosis' would be like an episode of House. Lots of rude comments and sarcasm flying back and forth when suddenly the answer comes out of nowhere and the day is saved. I think the first such site should be openHouseMD.com.